Wednesday, June 16

Chemo Round 2, Day 9

I decided to climb into Collin's bed next to him last night, so both of us ended up sleeping all night for a change. I'm amazed that the nurse and the aide came in and leaned over me to do what they had to do in the middle of the night, and neither one of us woke up. It was also nice to get my feet up all night. My ankles have been swelling a lot, I think because I just stand on the hard floor all day, and I don't walk any distance. When I sleep on the window seat, Collin wakes up multiple times during the night, and I spend half the night sleeping in the rocking chair next to his bed trying to get him to stay asleep, but my feet aren't elevated enough for the swelling to go down when I do that. So I'll probably do the same thing tonight so that we both get enough rest.

Poor Collin started the day vomiting, and it continued intermittently through the day. His upper airway must be coated with mucus, so it gags him and makes him throw up, or it collects in his stomach and makes him throw up. I think the poor kiddo thinks vomiting is normal, because it doesn't seem to bother him. Tonight he was eating ice cream at dinner, and all of a sudden I heard him grind his teeth. I have learned that when he does that, usually it means he's about to vomit. I was talking to the nurse and nurse practitioner, and I picked up a disposable chuck pad, held it in front of Collin, caught the vomit, and kept right on talking. We laughed about how quickly I got the chuck in front of him, and how I didn't miss a beat of whatever it was I was saying. Once Collin was done, he just pointed to the ice cream, asking for more. I think if I were in his place I would have been so upset, but he and I have gotten so accustomed to the vomiting that it doesn't seem to slow us down much. I look forward to the time that vomiting is no longer a way of life for us!

Collin's ANC, or absolute neutrophil count, a measure of his immune system, was officially down to zero today. His hemoglobin and platelets were low as well, so he had another blood transfusion (packed red blood cells) today, and he will have a platelet transfusion tonight. These should help him feel a little perkier tomorrow. Despite probably feeling pretty yucky today because of his low counts, he still managed to sit up unassisted on the floor mat for a combined session of physical therapy and music therapy. Since he can now sit unassisted, his PT made a new goal for him to be able to reach without falling over, and today he leaned over a bunch of times to reach for different musical instruments without losing his balance. Then we walked on taking a few steps again. This afternoon he was eager to play with his Occupational Therapist, and did a good job of using both hands and following simple directions. After OT was over, I climbed into the bed next to him, and we took a short nap. When he woke up, he was pointing to the little fridge, so I asked if he wanted a drink. He conveyed that he did, so I put some apple juice in his sippy cup. He took a sip and then threw the cup at me, and became very upset. I asked if he wanted me to help him, and he pushed me away. Then it dawned on me. I got out the container of grape juice from the fridge and held up both juices. I asked if he wanted apple juice or grape juice, and he pointed to the grape juice. So I put that in the sippy cup instead, and he was happy. I thought it was great-he definitely knows what he wants, and manages to get his point across!